A woman who is both conscious and responsive, according to her family, is scheduled to be taken off life-sustaining treatment this afternoon at Memorial Herman Southwest Hospital in Houston due to a provision in Texas law.
Carolyn Jones, 61, is a mother and wife of 40 years who suffered a severe stroke in December of 2017. Carolyn has lived in health care facilities since her stroke and has transferred between different rehabilitation facilities before landing in Memorial Hermann Southwest in November 2018. She requires dialysis, occasionally needs a ventilator for breathing assistance, and uses a feeding tube.
She has been slowly recovering ever since her stroke. However, doctors at Memorial Hermann Southwest have determined that continued treatment for Mrs. Jones is futile–a decision upheld by an ethics committee at the hospital. Following that decision, the hospital informed the family of their intent to end continued treatment within 10 days.
The Texan spoke with her daughter Kina Jones on Friday.
“My mom is going to die on Monday because of a law that saves hospitals money.”
Kina is the only daughter of Carolyn Jones. She and her father Donald have been fighting to save her mother’s life, while also calling for a repeal of the so-called 10-Day Rule, which is a provision found in the Texas Advance Directives Act (TADA).
The act was signed into law in 1999 by then Gov. George W. Bush. It was supposed to be a conflict resolution piece, outlining ways for patients and health professionals to settle disputes, in particular about end-of-life issues.
The 10-Day Rule stipulates that if doctors deem life-sustaining treatment futile, an ethics committee comprised of hospital employees reviews the decision for final determination. Should the committee concur, a family is provided written notice and has 10 days to secure treatment in another facility before care ceases.
In 2015, TADA was updated to ensure patients continue to receive both food and water to prevent starvation and dehydration from being used to end a patient’s life.
The hospital first attempted to enact the 10-Day Rule in Mrs. Jones’ case back in March, but the family was able to stave it off at the time. Three other facilities have agreed to accept Carolyn in a seeming rebuke to Memorial Hermann Southwest’s decision. The cost of transferring Carolyn and providing care is exorbitant, however, with Kina estimating it to be around $30,000 per month.
The Jones family has worked to try to enroll in Medicaid in a last-ditch attempt to find facility-approved “coverage” to help pay for the transfer cost. However, navigating the government bureaucracy for eligibility and enrollment before time runs out has been a daunting task.
Emily Cook, the lawyer for the Jones family, said that, “This 10-day rule can be applied to any patient, at any point, at any Texas hospital. It doesn’t matter if you have an Advanced Directive, it doesn’t matter if you’re conscious, doesn’t matter if you have a valid Medical Power of Attorney–this can happen to you,” said Cook.
Cook said that the appeals process is even more frustrating for families or individuals who disagree with an ethic’s committee’s ruling.
“The committee’s decision is unreviewable…you can ask for more time under certain circumstance, but why this person’s life is no longer appropriate, that decision itself is not reviewable by a court, you don’t get to argue about that,” said Cook.
When asked whether this provision in the TADA is constitutional, Cook said, “You can’t be denied public benefits without due process…it requires notice of what is happening to you, a meaningful opportunity to respond, and review in front of a neutral arbiter.”
Cook continued, “Everyone on the ethics committee is affiliated with the hospital, they are on the hospital’s payroll, how on earth is that neutral?”
Both Texas Alliance for Life (TAL) and the Texas Conference of Catholic Bishops (TCCB) support and defend TADA as written, which includes the 10-Day Rule. They have actively opposed efforts by some lawmakers to repeal the rule, which separates them from other pro-life advocates and organizations.
Dr. Beverly Nuckols, a physician and member of the Texas Alliance for Life public policy team, provided the rationale for TAL’s support for the 10-Day Rule in an online post.
“The opponents of TADA would force doctors to ignore their consciences to continue performing procedures and writing orders – for nurses and staff to carry out – against our best medical judgment, while faced with the moral distress of continuing acts that hurt our patient, as organ system after organ system fails, faster than we can compensate, prolonging and increasing his suffering and death,” said Nuckols.
There is legislation this session, offered by Sen. Bryan Hughes (R-Mineola), that would repeal the 10-Day Rule. Both Texas Alliance for Life and the TCCB are opposed to the bill (SB 2089).
When contacted regarding the current case of Mrs. Jones, Helen Osman, a communications consultant with TCCB, referred to a previous statement by the organization in opposition to SB 2089.
Additionally, the TCCB website publicly lists their official positions on various pieces of legislation, which includes the following statement on Senate Bill 2089:
“This bill requires health care providers to provide medical treatment they view to be inappropriate indefinitely at the demand of a surrogate. The TCCB opposes this bill it imposes indefinite treatment on dying patients, and ignores the reasonable medical and ethical judgment of professionals. Requiring physicians and hospitals to continue to provide non-beneficial treatment that they rightly believe is unethical and inappropriate violates their freedom of conscience and harms patients.”
Kina Jones responded that, “[this situation] clearly hasn’t happened to them…the medical profession doesn’t seem to be focused on helping people like it should be.”
Dr. Sheila Page, President of the Texas Association of American Physicians and Surgeons (TxAAPS), a state affiliate of a much larger free-market physicians’ organization, supports eliminating the 10-Day Rule within TADA.
“Imposing a 10-day limit on families to arrange transfer before withdrawing life-sustaining treatment is very threatening. Families subjected to this have been hurt by the coercive approach used. It is not something typically done by a physician who has been caring for the patient. The trust in the physician-patient relationship is broken by policies like this,” said Page.
She continued, “Patients clinging to life longer than expected and the families who cling to hope deserve better. Sometimes the outcome of the treatment is not what was expected. We need to handle these cases with grace, not threats.”
Were the 10-Day Rule to be repealed, supporters like AAPS say that the process of allowing physicians to raise ethical concerns about treatment would remain intact. And that specifically, physicians and hospital committees could still transfer a patient while respecting the decision by the patient or the patient’s surrogates to continue life-sustaining treatment.
The Texas Medical Association (TMA) has a public statement defending the TADA and the 10-Day Rule.
Dr. Stuart Pickell, MD, who in 2017 sat on two hospital ethics committees, commented in the TMA statement that the patient’s family is disadvantaged because they don’t grasp the medical dimensions of what’s happening and that they just know that their loved ones are sick.
Pickell argued back in 2017, right around the time that Mrs. Jones fell ill, that, “The Texas Advance Directives Act tries to make the decision easier by reconciling the wishes of a patient or the patient’s health care decider with the ethical duties of a physician, among other things.”
When hearing this statement, Kina Jones simply said, “excuse my French, but that’s bull****.”
Dr. Pickle goes on to say, “if the patient’s treatment wasn’t futile, physicians and families should have no difficulty finding somebody to take over. The problem is that in the medical community, generally, [these cases] are going to be universally understood to be futile, and that’s why they refuse to accept them.”
But that does not seem to be the case with Carolyn Jones as three facilities in Houston have agreed to accept her transfer.
Memorial Hermann Hospital, said in a statement, “End-of-life decisions are made by physicians after careful and thorough consultation with patients, their families, the healthcare team, and a medical ethics committee. The decision-making process is outlined in Texas law and can take many months.”
The Texan learned this morning that treatment will cease for Mrs. Jones at 2:00 p.m. today, the day after Mother’s Day, barring a last minute change.